Recently, I was blessed to be a part of a small group of parents and children who had the opportunity to speak to students at the Virginia Commonwealth University School of Medicine. As parents, we all shared a common bond of having a child with Down syndrome, ranging in age from 2 to 30. The students were all in their first year of med school, having just finished a week on genetics.
On a Friday afternoon, the class of 100+ viewed a terribly outdated video about Down syndrome, and then each parent (and in some cases, a young adult w/DS) had a chance to speak. In many ways, we were the first human faces these students saw in a somewhat clinical sense -- they had spent their first several weeks getting acclimated to Richmond, to med school, and to the rigors of learning about the human body. We parents of T21 kids each shared our stories in different ways -- the joys, the challenges, the positive and negative interactions we have had with the medical community through parenting a child with unique needs.
After class, several students congregated around each parent/child group and asked questions. I am so grateful for the thoughtfulness of these folks. For my own memory's sake, I want to keep these questions in mind for the future -- and I thought others would be willing to read this and humor me after a long blog-posting desert.
What is the toughest thing about having Henry?
Umm...he's a boy, and I was used to girls! Seriously, most things about Henry are such a joy. But to answer the question, the hardest thing has been seeing the children near his age do much more than him, well before he does so. A dear friend of mine's child was born the day before Henry, and I have several other close friends whose children are within a few weeks or months of Henry's birth. These children were walking, talking, eating, etc., well before Henry. So, yes, there have been times when it has been hard to see what they are doing. It is hard sometimes to remember that Henry is on his own timeline. But...that is OK. Henry is Henry. Every child, whether they have an extra chromosome or not, achieves milestones on his or her own terms. I have learned that with Henry, he may take longer, but such an achievement is a huge celebration.
You seem to have a very positive outlook. What advice could you offer on dealing with parents who see their situation as the glass half-empty rather than full?
As I reflect now on this question, I wish I had answered better than I did. That Friday, I recommended that the physician be a listening ear, but also that he/she be prepared to refer their clients to helpful resources, such as Early Intervention, counseling, etc. But I missed something big in my own life: I deal daily with the shadow of depression, and have for several years, since the post-partum issues I had after Emma's birth in 2006. So to hear that I am "positive" is a testament to God's healing power, and the work He did to bring clinicians into my life that properly diagnosed me and have helped me through a subsequent birth and postpartum adjustment, and to do so positively.
Each of us faces struggles in life. How do we handle them? Do we cry and gnash our teeth and boo-hoo to everyone around us? Or do we lean on God, rally supportive friends around us, and make the best of what we are given? And, honestly, "the best" is very much a part of Down syndrome. Who doesn't want extra hugs, love and attention? I could be sad, but honestly, it is hard to stay sad around Henry very long. He exudes life, unconditional love, and joy. There is only fullness around Henry -- nothing half-empty about it!
What are some things that a doctor has done that are positive and helpful?
More than anything, treat Henry first and foremost as Henry. A boy who is busy and curious, and who also has Down syndrome. I want them to joke and call him "tiger" and "sport" and interact with him like they would any patient.
At the same time, I am appreciative of those things that clinicians have done to make Henry's situation both normal and special. For example, in my pediatrician's office, each doctor or nurse practitioner uses a tablet computer versus paper records. But the problem has come up that the tablet does not have the Down syndrome growth charts loaded into the main system. So one doctor just wrote down Henry's stats and suggested I look them up at home on the DS growth chart. Umm...no, I will not be requesting you again.
Contrast this with two others in this large practice -- one carried in a book with the DS charts in them, so that she could accurately place Henry on charts appropriate for him. Another doctor downloaded the DS growth charts onto his personal tablet. These are small, simple acts. But they make a world of difference.
(To all the parents/kids) What did you think of the video? It seemed very negative.
Henry clapped. I don't think he likes the video, either. Truly, a video that uses words like "retarded" over and over again can perhaps be updated, I am sure.
You said that Henry uses sign language. How many signs does he know, and how hard is it to teach him sign language?
I used simple signs with each of my kids, such as eat, milk, and more. It is amazing to see what children can communicate before they are able to speak. With Henry, this goes beyond mere "baby signs" to a true need to communicate long term.
Henry knows and uses more than 25 signs, and he recognizes even more. He watches a "Signing Time" video once a day. We have Signing Time on DVD, and we also DVR shows that air on PBS. For Henry, Signing Time is his favorite show -- he requests it every morning after breakfast (and most of the day afterward).
Stay tuned for more Q&A! And thank you so much to the VCU medical students who were so enthusiastic!
